Watching Those You Love

We all know how hard it is when someone we love is poorly, when your child is throwing up with a bug, when they are hurt and upset or coughing and spluttering all night and it is disturbing their sleep, we would all swap places with them in a heartbeat.

Even harder is watching those you love more than anything in the world live their life with chronic illness and you know exactly how they are feeling because you feel it too.

Just lately my mums hip has been playing up. Giving way. Painful. Then as she stood from her chair one Monday lunchtime it went. We think her SI joint slipped, she thankfully saved herself with the edge of the kitchen table before she fell completely, the pain was acute and immediate leaving her unable to sit or stand, left somewhere in limbo in-between. She was unable to bare weight at all without the hip slipping again and leaving something pinched in the joint by the trauma. I happened to call just as it happened, dads voice told me straight away that something was up. As I spoke to mum we laughed, to be interrupted every minute or so when she would let out a yelp, we laughed at the normality of the situation for us, we laughed trying to puzzle out how she would sit down to wee, we laughed about her stubbornness refusing to get any help, we laughed because it made her feel a little better.

Now I get how she feels, exactly one year ago the same hip pain flared for me, for months I battled the pain taking only baby steps, literally, to avoid the SI joint of my pelvis slipping. In addition any twist and turn of my hip joint would cause that to subluxate, it was a mess, my husband was applying traction 3x daily to relieve the pain in my hip and I did constant unrelenting physiotherapy to just try to hold the bones in place. Only to find months later as I strolled along the path to the shops the joint popped out leaving me in a crumpled mess on the pavement.

You see I get it and that makes it harder to watch my mum. I know the hard work that it has taken to stabilise that joint again. I don’t want that for her. I can feel the pain and as she describes it to me and it makes me sick to the stomach. I know how hard it is to stay chirpy day in day out when completing the simplest of tasks can feel like running a marathon, how hard it is to stay upbeat when the pain is unrelenting.

It takes me back to when I lived at home, nearly 20 years ago now, my now husband lived with me in the small box room of my mum and dads three bed semi. One evening I heard a thud from upstairs in the bathroom, it was a noise that instinctively told you that something was wrong. I rushed to find mum, as I tried to get into the bathroom the door wouldn’t open. She had dislocated her knee twisting to flush the loo and had fallen behind the door. Her kneecap still hadn’t relocated but she wouldn’t let me in to help because she hadn’t pulled up her knickers. Twenty years on, I can still remember us laughing till we cried about the whole situation as we helped mum up (after she finally let us in.) It has always dominated those times.

Watching my children’s lives play out with all of this is even harder. I can now appreciate how my mum has felt all these years. They do not need to articulate how they are feeling, in fact they rarely do because I can see in their eyes. I can see the longing to be normal, I can see that they just want things to be easy. I watch the pallor of their skin change slightly. I watch them fall more as their legs get more wobbly, for them to take a second to compose themselves as they stand because their head goes a little dizzy. I see. I know what it’s like to say ‘I’m fine’ when inside you are crying, to just push through.

It is hard to watch those you love when you understand it. It makes my heart ache more than anything ever has. I would do anything to make it stop for them but I have to accept that I can’t.

Hereditary conditions weave themselves into the fabric of a family, through the generations. It is good to know that others close to us get how we are feeling without having to explain, to know how to help, to lift our spirits. To be completely alone with this without understanding from those we love or or the ability to have a good laugh would be so much worse.

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I spend hours and hours each week writing articles, staying up to date with what is happening in the EDS and CMT worlds and answering emails and messages (mainly from worried parents).

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About

Hello, my name is Sarah. I’m a mum, wife, writer, blogger, advocate and occasional public speaker. This is my blog, where I share our life with the world, my passion for raising awareness of EDS, CMT and ME and how I raise my children to be happy with their perfect imperfections. My Stripy Life is here to provide you with regular fresh ideas about chronic health, wellness and navigating the ‘systems’.

True strength is not just about overcoming obstacles it is helping others to overcome them. This is the true essence of My Stripy Life.